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Shriver Center researchers lead discussions on priorities for developing statewide integrated autism database

Researchers at UMass Medical School’s Eunice Kennedy Shriver Center will present state officials this spring with recommendations and priorities for developing an integrated autism database in Massachusetts, based on discussions from a Citizens Jury they led.

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“If we have better data on how many people have autism, the services they need and may be accessing, it’s easier to make arguments for funding services or other supports,” said Alexandra Bonardi, MHA, OTR/L, project lead and clinical assistant professor in UMass Medical School’s Family Medicine and Community Health. “And if we know how many people are being diagnosed with autism every year, schools can be better prepared for students on the autism spectrum.”

Another possible advantage to a statewide integrated autism database could be the identification of particular areas with higher rates of autism, and to begin to study the reasons for this.

The 19-member Citizens Jury included about 10 individuals on the autism spectrum, a half-dozen parents of individuals with autism, and researchers. The group met for two days in September, then had a two-week online discussion followed by another one-day meeting in October. The comments and questions are being compiled and condensed into recommendations for state officials. Citizen’s Juries are one of several deliberative methods that are being studied by the Agency for Health Research and Quality (AHRQ) as a means to improve health care decision-making by involving members of the public.

Concerns raised through the Citizens Jury include who should be making decisions for people on the autism spectrum,   whether individuals should have the ability to opt out of data collection, and whether researchers should have access to the data.  Some feared the database could be used against individuals on the autism spectrum.

The Shriver Center partnered with the Jefferson Center in Minnesota, which specializes in Citizens Juries, and the New England chapter of the Autistic Self Advocacy Network (ASAN), which is a national group for and run by individuals with autism, on the project.

This initiative was sparked by the Massachusetts Autism Commission in 2013 that recommended steps Massachusetts should take to improve the lives of those on the autism spectrum. It recommended that state agencies work together to create an autism database to better understand the services needed by the population.

The Shriver Center researchers saw the state moving toward the creation of the database and Bonardi applied for federal funding, in collaboration with ASAN, for a Citizens Jury to recommend principles for compiling the database.

“The group was brought together to make the database the most advantageous and beneficial to the stakeholders,” Bonardi said.

Some states have set up registries of children who have been diagnosed with autism. In New Jersey, which has one of the highest rates of autism in the nation, licensed health care providers are required to enter any child diagnosed with autism into the Autism Registry database.  The registry is used for referrals for care coordination.

“There are registries for people with autism in other states and it’s concerning when a state barrels ahead and sets up a registry for people with autism without input from the stakeholders,” Bonardi said.

In addition to the recommendations to be presented to state officials, the group is creating a video of the Citizens Jury discussions and plans to create a wiki web page to share information about data collection.

The two-year project is funded by the U.S. Department of Health & Human Services’ Agency for Healthcare Research and Quality.

“The project will include outreach to assess whether sharing recommendations from the Citizens Jury changed the perceptions of state legislators,” Bonardi said.

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